Charlotte

@integral I sincerely appreciate the effort and lengths you've gone to to help. Thank you so much. The only thing out of all the information mentioned that I haven't tried (Or currently doing) is CBD. CBD never agreed with me, all my life, but maybe I'll give it a try and run an experiment. Have you tried LDN for your symptoms @integral ? It's taken me almost 6 months to titrate to 1.3ml but I absolutely feel it has helped with bodily (not neurological) PEM symptoms. Highly recommend giving it a try if not already. Thanks again 🥹🩷

@integral shit I'm so sorry you've also had/are having a similar experience, it's seriously an underestimated illness. My mum has just gone undergone extremely aggressive cancer treatment over the course of two years to treat an aggressive cancer and even she has had a better quality of life in comparison to me. I can relate also with not trusting doctors, I am really sorry this has been your experience, it's beyond invalidating. At least now they are unveiling biological markers of Me/CFS. COVID, well, in particular long COVID (unfortunately) has been the catalyst for ME/CFS research and I believe there are currently a substantial amount of planned and ongoing research as we speak. It was announced just last week that the German government are funding long COVID and other post infectious syndromes research by donating half a billion euros. At least that's something right! 😂 Thank you for your suggestions. Understandably, as you probably know, you become and expert in your own condition. Therefore I have and do continue to research both empirical and anecdotal based evidence, making sure not to leave any stone unturned. I apply and experiment anything low - medium risk, I am basically a walking human experiment at this point. 🥲🤓😄 I am very astute in what my body is exposed to be it the food, the air I breath or the material I learn. I'd say I'm pretty on point in this area of my life. I believe my body is always fighting back to homeostasis I just have to be super attuned and attentive in order to help it get back there. How's is your health now if you don't mind sharing? No pressure at all.

@integral I understand your point but where I think context really matters is why people end up being told their illness is permanent, untreatable, or something they simply have to “manage.” Historically, post viral fatigue syndromes were recognised long before modern medicine, but once ME/CFS became predominantly associated with women, and once clear biomarkers were lacking, it was gradually psychologised and deprioritised by a male dominated medical system (suprise suprise 🫠). This sits within a much wider pattern in healthcare where women’s pain, fatigue, and complex systemic symptoms have consistently been dismissed, under researched, underrepresented or attributed to psychological or even reproductive system causes. That legacy still shapes clinical attitudes today. So when people are told “there’s no cure” or “nothing more can be done,” that isn’t a neutral scientific conclusion, oh no my friend, that's because it’s often the result of research gaps, poor disease framing (even the name “chronic fatigue” trivialises it!), and an over reliance on symptom management rather than mechanism. I also agree that pointing to things like thyroid dysfunction or iron deficiency often becomes circular. Treating the downstream issue doesn’t explain why the dysfunction occurred in the first place, and for many people it doesn’t resolve the fatigue anyway. That’s exactly why patients end up becoming their own doctors and seeking answers online, not because they’re anti science, but because conventional pathways frequently don’t deliver results in real practice. The real ethical problem isn’t people exploring different contributing factors, it’s a broader system issue that prematurely closes the door by declaring complex chronic illness permanent, without fully understanding or addressing the underlying biology. 🫠 And absolutely yes I have personal experience with this topic, and unfortunately a lot of lived experience. Three years ago after my third COVID infection I was completely incapacitated almost overnight. I've since spent years chained to my bed isolated in my bedroom in the pitch black with no sound unable to talk, walk, even lift my head as I lay in a completely broken body. As I do have a substantial amount of lived experience (experience is key here) I have spent three years learning from every angle, researching historically what this could be where it came from etc etc, until my eyes can't tolerate anymore 🫩.

@integral I think it’s fair to say environmental chemicals can be relevant for some people, especially those with chemical sensitivities, but the evidence doesn’t support them being the main cause of chronic fatigue overall, this appears to be an over generalisation on your part based from your beliefs. These illnesses have multiple overlapping biological drivers, so learning about environmental factors may be useful for some individuals, but unfortunately it's not accurate nor ethical to frame it as the core cause for everyone.

Elaborate

@integral is this your own opinion or evidence based?

@integral it's ME/CFS not MCS

@Zeroguy what does your heart tell you to do?

@Username have you looked into long COVID?

@WelcometoReality From my understanding. Yes. But again, a little of everything won't kill you.

This.

@mmKay hows the water flosser? P.s cool thread 🧵

@ZenAlex absolutely yeah, mine appeared out of no where. https://www.mastcellaction.org/diagnosing-mcas I found this online with regards to MCAS diagnosis. If you want, and it's a harmless approach, you could try the medicine Alevia, which is brand name Fexofenadine hydrochloride an anti histamine available at all major supermarkets. That is 1 option. https://www.tesco.com/groceries/en-GB/products/310650539 Not all long covid patience do get MCAS activation but many do, many I have met in person. You could also (which I use) try Hyperbaric oxygen chamber therapy, completely harmless, see if you could find this local to you? See if your symptoms improve at all? Have you been to the GP? Also I HIGHLY recommend reading a book called the Long COVID handbook (Gez Medinger & Professor Danny Altmann), that could potentially answer so many of your questions and put you out of your misery. ((DO NOT TAKE IF - You are allergic to fexofenadine or any of the other ingredients in this medicine WARNINGS - Talk to your doctor or pharmacist before taking Allevia if: You have problems with your liver You have problems with your kidneys You have or ever had heart disease You are elderly You are pregnant or breast-feeding - Do not exceed the stated dose - If symptoms persist consult your doctor Keep out of the sight and reach of children. Allevia is unlikely to affect your ability to drive or operate machinery. However, you should check that these tablets do not make you feel sleepy or dizzy before driving or operating machinery.))

Mine begun with long covid, as I've noticed with others. Some LC patients have lost their hearing altogether ☹️ On a scale of 1-10 mine fluctuates between 2-3.

@ZenAlex As part of my long covid investigations my adrenaline responses where measured and results where fine. Other long covid patience are also reporting hair loss. As have I. I have lost been diagnosed with Postural Hypotension (low blood pressure) and am now on sodium chloride tablets alongside compression stockings. And MCAS is also a typical symptom of LC, not for everyone though.